 |
||||||
| Hyperinsulinism |
 |
|
|
|
|
|
| Identification | The bag should indicate, on the outside with
the "MedicAlert" symbol in order to prompt people
to look into the bag for instructions in case of an emergency. Also, the bag should should carry the owner's address and phone number specifying to return it to owner in case it might get lost. |
An information/instruction sheet |
This should contain the child's name, parent's name, parent's phone numbers, child's doctors phone numbers, a summary of the child's medical condition, and hospital medical record number if known, along with instructions on what to do in the event of a hypoglycaemic episode. This is in case one is temporarily unable to supply the necessary information for the child's care, e.g. Daycare, car accident etc. |
Spare prescription medication |
In case one spills or loses it or are away longer then planned. Octreotide, diazoxide or insulin may have to be packed in ice/kept cold |
Glucagon injection kit |
To increase BSL's up in case of an emergency. |
Glucose testing kit |
Should contain plenty of supplies and a pen to record BSL's |
Tissues |
For wiping before and after BSL testing as well as little noses. |
Hand sterilising solution/sterilising wipes |
Very handy when one wants to clean fingers before performing a BSL. |
At least one of the following: lucozade/glucose tablets hypostop gel/cake gel |
To quickly elevate BSL's in a hurry. |
Spare bottles of formula |
Either tinned or packed in ice |
Spare food |
Non-perishable carbohydrate based food, but low GI and high GI, such as biscuits and raisins. |
Container holding: |
Thermometer, children's Panadol, Dimetapp (for a runny nose), spare syringes to administer medicines. |
Ice pack |
To keep meds cold, if needed |
| Cornflour |
in small screw top jar In case one needs to raise BSl's and other options aren't available |
Special needs for children on insulin
Spare injection syringes |
|
Spare insulin pen and needles |
The insulin pen does not have to be kept cold |
Spare digestive enzymes |
If it applies to the child. A container, spoon and food might be needed in order to mix them. |
Special needs for children on diazoxide
| Diuretics | If it applies to the child |
Special needs for children on Octreotide
| Spare pump supplies AND spare injection needles. | Even if the child is using a pump, spare needles
should be carried in case the pump malfunctions. When using the pump you should also carry a written copy of the pump’s program. Don't forget extra batteries for the pump and all other parts that may need changing. |
Special needs for tube fed children
| Spare replacement G-tube | In case the one in place it pulled out |
NG-tube and installing supplies |
Including: tape, scissors, lubricant, litmus paper, small syringe… It is good to know how to install an NG-tube in case the G-tube is pulled out and can not be replaced immediately. |
Spare feeding syringe and suitable food |
This chart was created by Jessica’s mom in order to view the ups and downs of Jessica’s BSL on a daily basis. She prints out blank ones and fills them in by hand… and joins the dots! Jessica’s mom use to love dot to dot as a kid and now she gets to do it as an adult! :-)
Please bear in mind the chart is in mmol/l and numbers will have to be changed if mg/dl is used.
In order to view this file, get Adobe Reader©.
Starting school with persistent hyperinsulinamic hypoglycaemia in infancy (HI)
The requirements on starting school vary widely depending upon the needs of your HI child. For many all that is required is that the school staff understand the risk of hypoglycaemia, how to identify it, and what to do in an emergency situation. Where daily monitoring and medical intervention is required, more detailed planning and education of staff is required.
Remember that all children are entitled to attend mainstream school, whatever their medical issues may be, although it can often be a frustrating process for parents to ensure the school staff understand and adhere strictly to the medical requirements of their child.
Parents need to be persistent and follow up with the school on all aspects of the child’s care.
The information below is designed as a guide only developed from HI parents’ experiences to hopefully help in making the transition to school as easy as is possible for you and your child. You must discuss your child’s specific needs with your healthcare professionals.
It all may appear quite daunting, but many people have gone before you! Our HI children have settled in well at school and are thriving.
Lead up to starting school
Approach the school for an interview with relevant staff (each school may differ, principal, deputy, head of infants and/or school nurse).
Provide all paperwork (see below) and discuss in detail your child’s daily management. Ensure the school understands what you require them to do.
Schools can often provide details of who your child’s teacher will be before they start and an interview can be arranged so the teacher can meet you and your child to discuss the management plan.
It is important to find out exactly how teachers and staff can work with the management plan for your child. Teachers may not agree to be held responsible for taking blood sugar tests and your child may require special carer arrangements. In these instances you will need to approach the appropriate authorities in your area to find out what services can be provided.
In the more complex cases the principal/head teacher of the school should be able to inform you of the relevant authorities (ie health authority or local council) you would need to contact. More meetings will be required with these people and then possibly care plans on all the different aspects ie glucometer training, insulin training, enzyme supplement training etc. Personal carers could be appointed and they will then also have to have training.
Information for the School
Attached are samples of documents parents have used to provide information to their child’s school. These may assist you in developing your own plan. Each school will differ in their approach and services provided, whatever the country, state or county so the documents will need to be ‘user’ friendly pertaining to the particular school.
Management Plan
The school management plan’s purpose is to provide information regarding your child’s medical condition and his daily needs. Attached are 2 samples of plans:
The simple management plan – where minimal intervention is required. This is an example where very little intervention is required by the school.
The complex management plan – where close monitoring, documentation and medication is involved.
When developing your own plan for your child, in addition to the information contained in the above samples, some of the issues which may be relevant are:
- Document – how much your child has eaten, have this signed off by appropriate staff.
- Insulin/ Octreotide – how, where and when to inject.
- Private and/or Public health insurance and Hospital record numbers where relevant.
- Medication – what it is and who can use it, i.e. Hypostop is just sugar so can be used by anyone and there is no minimum amount to be administered.
- Pancreatic Enzyme Supplements – why they are needed.
Medical Emergency Information Sheet
The medical emergency information sheet’s purpose is to give a step by step approach to handling hypoglycaemia. It should be displayed in staff room/sick room and by the school telephone so nobody has to look up emergency information including telephone numbers.
Two examples are again attached, simple and complex.
BSL Testing/Glucagon
Many families find it useful to keep a Glucagon injection kit at school, to save transporting it there and back each day and should be kept in the school fridge.
Where children are too young (or not happy) to do BSL, a nurse or in some schools the staff member appointed to hand out medication can be authorised to do this for you, professional training may be required. If testing is done on a regular basis then having two Glucometers at the school is advisable in case there is a problem with one.
Education of Staff & Students
It is important to ensure that where non-medically trained staff are required to take your child’s BSL they are trained to do so, understand how to use the glucometer and to identify the signs of a hypo. Not all children show the same signs of a hypo, if at all, so ensure these details are included in the information provided to the school and you discuss this with the child’s teachers.
Check with the school to establish whether they have procedures in place to ensure ALL STAFF are aware of your child’s issues, and that any casual or replacement teachers for your child’s class are briefed prior to taking the class.
Questions can often arise from other children about your child’s condition, and you may wish to discuss with the teacher the possibility of providing the class with the basic information on your child’s condition and why they have to have BSL tests, eat during class time or have a carer. This can help demystify the whole process and may save your child from having to constantly answer questions about their situation.
Special Needs
As raised in 1 above, the more specialised are the needs of your child from both a medical and educational perspective, the more important it is to contact the appropriate authorities early. This will ensure you find out as much as possible about your options and have time to organise the appropriate care.
The options available will vary widely depending upon your country, state, county and/or local authority.
Transport
Where your child must travel in the school bus for any great distance, it may be worthwhile ensuring the bus driver is aware of your child’s condition, especially if he/she is the only adult on the bus.
Visiting new friends
Sometimes it can be useful to have a one page document, for friends’ parents with basic information, such as mobile and phone numbers and any special food requirements. If your child has a complex condition then hopefully the friends’ parents will be willing to use a glucometer and then deal with a hypo if necessary.